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Libby on 26 February 2018

Category: Other conditions

Replies: 1

Last updated: 27 February 2018

Looking for others with Goitre/Nodules on thyroid
by sandy craine (Feb 27)

I agree with your very legitimate worries about radioactive iodine and I am not at all sure of the logic underlying the clinical advice you have received from specialist clinicians, your

by Libby (Feb 26)

I was diagnosed CML in Oct 17 with WBC of 330. I'm on Dasatinib 100. I was diagnosed after getting yet another serious chest infection and my GP suggested I have a full blood count.
For
Category: Other conditions

Replies: 1

Last updated: 27 February 2018
Lesley Margetts on 24 February 2018

Category: Uncategorised

Replies: 13

Last updated: 26 February 2018

Recent diagnosis CML
by Lesley Margetts (Feb 26)

Thank you for sharing with me

by LouiseS (Feb 26)

Hi Lesley
welcome to this forum. My husband was diagnosed at the end of Sept. He has been on Sprycel ( dasatinib) ever since. The first month to six weeks was very emotional. I think although he had

by T and M (Feb 25)

I hear where you are coming from Lesley. It is wise to have options on the table if you need to resort to them. You may have very little or no side effect; never hurts to hope for

by Lesley Margetts (Feb 25)

Thank you for the information, my daughter will be coming with me, she is a qualified Biomedical Scientist although not specialising in Bloods, her knowledge is very useful. I will be attending the
Category: Uncategorised

Replies: 13

Last updated: 26 February 2018
sandy craine on 25 February 2018

Category: About CML

Replies: 0

Last updated: 21 March 2018

New to Diagnosis? 10 Facts About CML
by sandy craine (Feb 25)

https://www.cmlsupport.org.uk/section/10-facts-about-cml
Category: About CML

Replies: 0

Last updated: 21 March 2018
AndrewRego on 20 February 2018

Category: Blood tests

Replies: 6

Last updated: 24 February 2018

Poor three month PCR
by T and M (Feb 24)

We know the feeling as well. My husband was dianosed in September 2017 and he was at 90% and at 2 months he was 34% and at 3 months he was 36%. Very disappointing and it was talked about

by AndrewRego (Feb 23)

Thank you, everyone, for all your positive responses. I know it's probably a cliche to say but finding this forum has been such a huge boost for me and I can't thank everyone enough.
In terms

by SteveJT (Feb 22)

Hi Andrew,

I had exactly your experience back in December 2014.

I'd been dxd in September 2014. I was just starting to think I was 'getting to grips' with having CML. I had a very

by sandy craine (Feb 21)

Hi Andrew and welcome to this forum.
Yes there are many of us who did not have optimal PCR results when first on TKi treatment. I know this first PCR result must be disappointing for you, however
Category: Blood tests

Replies: 6

Last updated: 24 February 2018
AF on 22 February 2018

Category: Uncategorised

Replies: 3

Last updated: 24 February 2018

CML Survival Rates & Life Expectency
by scuba (Feb 24)

The reality is CML patients who respond to TKI therapy (FISH = zero; CCyR) will not die from CML. Won't happen.
In fact - CML patients who respond should be more concerned with diet and overall

by cmljax (Feb 24)

The numbers you are looking at have at least some pre-TKI population in them. Take a look at these 2 articles for example, especially the Swedish study
http://ascopubs.org/doi/full/10.

by LouiseS (Feb 22)

AF , I remember when my husband was diagnosed looking at the data available and thinking oh that doesn’t look so great. I was also scared by some of the Facebook CML sites where people were posting

by AF (Feb 22)

I understand that the data set is still relatively fresh since TKIs haven’t been around for that long but does anyone have any reliable data, case studies, reports, etc on average survival rates and
Category: Uncategorised

Replies: 3

Last updated: 24 February 2018
chevyflame on 2 February 2018

Category: Side effects

Replies: 11

Last updated: 23 February 2018

Spyrcel and Pleural Effusion
by chevyflame (Feb 23)

I'm hoping that the pleural effusion will gradually dry up. Except for a brief bout with pneumonia, the pleural fluid is on a downward arc, The other side effects I have are tolerable and much less

by chevyflame (Feb 23)

Sandy,

Thank you for the solid information in your post. I've just spent three days in the hospital because my breathing and pleural fluid rapidly worsened. My oncologist,

by cmljax (Feb 18)

I have been on Tasigna 150 mg/day since reaching PCRU 5 months ago. I still have some side effects (occasional benign heart arrhyhtmia which is helped by a little xanax of all things) and mild

by sandy craine (Feb 18)

Hi and welcome to our forum,
I share your concern that you have a diagnosis of Long QT syndrome and are being treated with nilotinib which, from a brief search, is contraindicated for this condition
Category: Side effects

Replies: 11

Last updated: 23 February 2018
AF on 18 February 2018

Category: Uncategorised

Replies: 8

Last updated: 22 February 2018

Sprycel Side Effects
by scuba (Feb 22)

Thanks for the correction - must be the fast I am on )#(@)@!_(! ... not reading straight.

by AF (Feb 22)

Scuba MPV is mean plalet volume it is the size of platlets. I think the one you are referring to is RDW

by scuba (Feb 22)

You are doing well. Platelet count rising to mid-normal levels is a good sign.
You are very early in treatment. Your blood system has to regenerate from what was a largely leukemic one to more

by AF (Feb 22)

Received my weekly CBC results. Platelets are rising (now at 227 x 10^9 /L). Hemoglobin (113 g/L), absolute neutrophils (1.8 x 10^9/L) and RBC (3.6 x 10^12/L) are stabilizing. WBC has dropped
Category: Uncategorised

Replies: 8

Last updated: 22 February 2018
Sue.J on 23 October 2017

Category: Organising your life

Replies: 9

Last updated: 21 February 2018

Holiday
by David Fitz (Feb 21)

Hi there,
Are you UK based? Many member of this forum have had success with World First. Perhaps try there? Individual circumstances with CML vary, of course, so it may or may not be a good idea to

by Colin1964 (Feb 21)

Hi my husband was diagnosed in December 2017 and we were planning to go to Barbados for Christmas 2018. I am trying to get holiday insurance sorted before we book but the quotes are in excess of £

by MartinZA (Oct 25)

Hi everyone
I just thought I'd weigh in on this topic... Travelling is my life and is the thing that helped me cope best after my diagnosis, and I refuse to let my CML prevent me from doing what I

by sue. R (Oct 24)

I was diagnosed in June, like you I had a week holiday plan for Iceland, I was hospitalized, treated, came home. few days before vacation, nose bleed, hospitalized again, received blood,
Category: Organising your life

Replies: 9

Last updated: 21 February 2018
loafer on 21 February 2018

Category: Uncategorised

Replies: 2

Last updated: 21 February 2018

Latest PCR
by David Fitz (Feb 21)

Congratulations. Right on the cusp of MMR!

by scuba (Feb 21)

Actually - Dasatinib (Sprycel) may actually help/facilitate bone formation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3087319/
I suspect poor healing may be more to diet and genetics. Vitamin D

by loafer (Feb 21)

So I just received my latest PCR, 0.134 IS, down .048 since 11/2017 now the slow downward spiral starts, I am living on 100mg Sprycel and doing ok with it.
I do have a question 6 months prior to the
Category: Uncategorised

Replies: 2

Last updated: 21 February 2018
Sandrea on 19 February 2018

Category: Clinical trials

Replies: 1

Last updated: 21 February 2018

A new drug on the horizon?
by sandy craine (Feb 21)

Hi Sandrea,
Yes this TKI is akin to ponatinib in that it targets the 'gate-keeper' multi-drug resistant mutation T315i. The number of patients who carry this mutation at diagnosis is very small, but

by Sandrea (Feb 19)

"Sun K706 is a novel tyrosine kinase inhibitor, intended for the treatment of chronic myelogenous leukemia (CML). While currently available oral drugs like Imatinib (Gleevec®), Nilotinib (
Category: Clinical trials

Replies: 1

Last updated: 21 February 2018
Lucas on 19 February 2018

Category: Food & fitness

Replies: 3

Last updated: 20 February 2018

Lipase rollercoaster
by Lucas (Feb 20)

Thank you, David and Sandy. i read that paper last year, when my lipase started to elevate. Funny thing is that the patient with crazy levels, even in lower dose, still have high lipase. I'm talking

by sandy craine (Feb 20)

Hi Lucas,
David's link to the paper on elevation in pancreatic enzymes experienced by some patients who are treated with nilotinib, is a very informative read. Thanks David- I have put this on

by David Fitz (Feb 19)

Hi Lucas -
I presume you found this paper? Seems like the issues you have are, if not common, quite possibly linked to nilotinib..
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2791949/pdf/

by Lucas (Feb 19)

Hey, guys! Hope everybody's fine! I just want to share my lipase history with you. Well, since january/2017 i'm having problems with high lipase, and amylase. Sometimes very, very high, like four
Category: Food & fitness

Replies: 3

Last updated: 20 February 2018
dadbags on 20 February 2018

Category: Uncategorised

Replies: 0

Last updated: 20 February 2018

helping thyself
by dadbags (Feb 20)

romo--hope ur doing good--1000%u as a patient must take part in your own healing process--diet-exercise-mental alertness&awareness-u cant say JESUS,GOD,MOHAMMED,BUDAH--WHY ME--U have to get off
Category: Uncategorised

Replies: 0

Last updated: 20 February 2018
dadbags on 16 February 2018

Category: Uncategorised

Replies: 2

Last updated: 17 February 2018

reduction in dosage
by Romo (Feb 17)

I believe all this.
Take part in your own Doctoring. And keep on living.
It’s not easy but winning ain’t easy. If it was, losers would win.
Not far behind you. 66 yo old here.
I still

by Isla D (Feb 17)

Thank you for sharing that Steven! Very inspiring!!!!

by dadbags (Feb 16)

hi nigel&sandy--well as u know they reduced my gleevac to 200mm from 600mm-great results-all my functions r normal--liver,kidney,etc---also NO MORE ANEMIA-no more gout-no more RBC problems-WBC-
Category: Uncategorised

Replies: 2

Last updated: 17 February 2018
Amy James on 16 February 2018

Category: Uncategorised

Replies: 4

Last updated: 17 February 2018

Please help
by Romo (Feb 17)

The day to day fluctuations of blood results even if out of normal range, to a degree
are not alarming. One time I had blood work done many years ago and my Dr. called
me in to discuss my

by Libby (Feb 16)

I was recently diagnosed and my WBC was 330, so 6.7 is fine. Your platelets, at 388 are within normal, as the high end is 450.

I would cut out fatty, processed foods, and see how that

by scuba (Feb 16)

On the face of it, you almost certainly do not have CML, but only a FISH/PCR test would be definitive.
When CML takes hold, red blood suffers. You have no signs of anemia, in fact, your red blood

by RC Kirk (Feb 16)

Doesn't look like CML to me, but I'm not a doctor.
What does your doctor make of your recent blood work?
Category: Uncategorised

Replies: 4

Last updated: 17 February 2018
Raviteja Bandaru on 13 February 2018

Category: Reproductive health

Replies: 3

Last updated: 19 November 2018

Can I get married and have kids with CML
by Romo (Feb 15)

You can’t eat grapefruit.
So if your wife serves you grapefruit
your marriage may be over.
Romo

by Raviteja Bandaru (Feb 15)

Thank you very much David. Your reply gave me a new hope and link you shared is very much helpful.

by David Fitz (Feb 13)

Hi Ravi,
Hello and welcome. Your questions are very sensible ones and fortunately for you, your CML and treatment ought not to interfere with your plans for your life.
Though CML is genetic,

by Raviteja Bandaru (Feb 13)

Hi , I'm Ravi 25 years old from India. I got diagnosed with CML 1 year ago and I'm taking imatanib since then. Now I'm thinking of getting married. Can I get married without any issues and can I
Category: Reproductive health

Replies: 3

Last updated: 19 November 2018
sandy craine on 13 February 2018

Category: Uncategorised

Replies: 1

Last updated: 13 February 2018

Link to archives of now defunct old LLS CML Forum
by scuba (Feb 13)

Hi Sandy,
Thanks for welcoming us to this forum. It is very natural and easy to communicate, and search for threads from years ago. Sandrea's capture of our old LLS forum threads is a huge

by sandy craine (Feb 13)

Sandrea, a member from the US LLS forum and a new member here has posted a link to the archives of the 'old' LLS forum. As members here may miss this link (Sandrea's post is quite a long way down on
Category: Uncategorised

Replies: 1

Last updated: 13 February 2018
sonica on 8 February 2018

Category: About CML

Replies: 2

Last updated: 11 February 2018

Dosage of Tasigna
by sonica (Feb 11)

Thank you Admj for your response. 5 days in I don't vomit I have other symptoms. I have talked with someone from a support group here in Sydney and I am more and more accepting my situation and see

by AdamJ (Feb 8)

I am no expert, but if this is happening only 3 days in, I would head back to the doctor and find out if you can reduce your dose for a short time and see if your body adjusts to the new medication

by sonica (Feb 8)

Hello I have started Tasigna (600 mg) 3 days ago. On the 3rd day I vomited just before taking the morning dose. Not knowing anything jet about the side effects except for the brochure that came with
Category: About CML

Replies: 2

Last updated: 11 February 2018
RC Kirk on 9 February 2018

Category: Blood tests

Replies: 7

Last updated: 10 February 2018

Question about starting Sprycel and Labs
by David Fitz (Feb 10)

When I said "what's going to really radically change" I meant in my particular case of going from 100mg to 70mg of dasatinib. Seems a pretty safe change that wouldn't warrant weekly monitoring.

by scuba (Feb 10)

"Realistically, what's going to really radically change?"
In one week, my neutrophils dropped from 1.2 to 0.3 - dangerously low. I had to have a drug break until my counts recovered which took weeks

by LouiseS (Feb 9)

Kirk I think you should at a minimum have a blood test every 2 weeks if not weekly for the first 6 weeks. I believe Sprycel is a much more potent drug than Gleevac. Also it will help your

by David Fitz (Feb 9)

I suppose it's different everywhere. I dropped from 100mg to 70mg of dasatinib, so increased PCR tests from once a quarter to every six weeks. I don't think weekly, or even monthly monitoring would
Category: Blood tests

Replies: 7

Last updated: 10 February 2018
Walt1955 on 8 February 2018

Category: Side effects

Replies: 4

Last updated: 8 February 2018

Tasigna side effects
by chevyflame (Feb 8)

Hi Louise,

You're are very lucky to have a receptive oncologist. My previous oncologist was very resistant to questions and research. I did extensive research concerning an eye issue (diffuse

by LouiseS (Feb 8)

My husband has been on dasatinib for 4 months now. He has had some of the symptoms you describe your husband is experiencing. He felt like his heart was beating really loudly in his head but this

by cmljax (Feb 8)

I started on 600 mg/day Tasigna in October 2016. I did not have flushing effect or the pulse in my eyes and ears or the joint aches. The head hurting could be folliculitis - I had that

by Libby (Feb 8)

I am on Dasatinib, but I had the "heart beat in the ear" thing. I think this is due to low platelets, as mine has all but disappeared as my platelets have started to go back to a better
Category: Side effects

Replies: 4

Last updated: 8 February 2018
vonnie on 7 February 2018

Category: Uncategorised

Replies: 2

Last updated: 8 February 2018

bone marrow
by David Fitz (Feb 8)

Hi Vonnie,
This very much depends on the doctor, the hospital etc.
The more "modern" approach is not to take bone marrow samples unless there is a need. However some doctors continue

by Romo (Feb 8)

Witch doctors, Voodoo shaman, Chiropractors, PHD’s, and Acupuncturist.
I avoid all these professions.
Romo

by vonnie (Feb 7)

do all doctors carry out regular bone marrow tests if blood tests are showing normal
Category: Uncategorised

Replies: 2

Last updated: 8 February 2018